Trust and relationships between people with sickle cell disease and healthcare professionals: Regional comparisons from the listen survey

Abstract

Abstract Background and Aim Sickle cell disease (SCD) significantly impacts health, with care quality influenced by healthcare professionals' (HCPs) relationship with patients. The Learnings and Insights into Sickle Cell Trial Experiences (LISTEN) survey explored the perception of people with SCD (PwSCD) toward their HCPs across regions in the domains of trust, feeling understood, and ease of building a relationship. This analysis highlights regional variations and the importance of strengthening healthcare relationships to potentially enhance patient outcomes and participation in clinical trials. Methods The LISTEN survey was a global, quantitative study conducted from October 2022 to August 2023 across 17 countries. PwSCD aged 18 years and older were surveyed about relationships with their HCPs and past clinical trial participation (Yes/No). PwSCD were asked to rate on a Likert scale (0–10) how much they trust their HCPs to manage the care and treatment of their SCD, how well they felt understood by their HCPs treating their disease and how easy they found it to build relationships with their HCPs. Data are reported by categorizing the responses as low (0–4), moderate (5–7) and high (8–10) and analyzed across six regions: Sub–Saharan Africa (SSA), Europe (EUR), Latin America (LATAM), Middle East and North Africa (MENA), North America (NA), and South Asia (SA). Results A total of 1,145 PwSCD (307 SSA, 254 NA, 242 EUR, 122 LATAM, 142 MENA, 78 SA; female: 58%; mean age: 43 years) completed the survey. A larger proportion of PwSCD from SA and SSA (both 57%), LATAM (56%) and MENA (58%) reported a high–level of trust (score of 8–10) in their HCPs' ability to manage the care and treatment of their SCD as compared to respondents from EUR (36%) and NA (47%). Similarly, a greater percentage of PwSCD in SA (61%), MENA (57%) and SSA (53%) reported that they were highly understood (score of 8–10) by their HCPs who were managing their SCD as compared to those from EUR (32%) and NA (43%). Furthermore, 54% of PwSCD from SSA, 49% from MENA and 45% from NA reported a high level of ease (score of 8–10) in building overall relationships with their HCPs' in managing their SCD. PwSCD participation in clinical trials varied across regions (37% in NA, 33% in LATAM, 25% in EUR, 16% in SSA, 11% in MENA and 0% in SA). Notably, respondents from SA, MENA and SSA who had the lowest trial participation reported a higher level of trust in and feeling understood by their HCPs. ConclusionThis analysis highlights regional disparities in trust and relationships between PwSCD and HCPs. Strengthening these relationships, especially in regions with limited specialized care, may improve patient satisfaction and outcomes. Lower levels of trust and feeling understood experienced by PwSCD in high resourced regions (EUR and NA) with greater availability of therapies warrants further investigation. The regions with high PwSCD/HCP trust levels are largely under–represented in SCD clinical trials suggesting enhanced effort in making trials available in these areas may lead to enhanced enrollment and pace of development of much needed novel therapies.